I am beyond relieved. A little sore but that should dissipate in a few days. I hope @Debbie has good news as well.
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Hello everyone. It’s Debbie! I made it. Yaya!! It was so so wonderful. My Dr. Is the best. Surgery was 8 hrs and then his helper closed up for 4 hrs. They took so much time and were really careful. I lost 3 shot glasses of blood which wasn’t enough to worry about. I was hooked up to a cell saver in case but didn’t need it after all. I’m so pleased. I have all of my functions. I cried when I woke up and could swallow. That was my biggest fear. I’m not dizzy like I was at all. I still have nausea and vomiting about once a day and take zofran but it’s so much better. Hopefully I can get off zofran soon. I’ve been on it for 5 mths with my dizziness. It’s great to move and walk after such a surgery. I was so afraid but so calm the day I went in. My Dr put a glove on so I could hold his hand! I was in ICU 3 days and reg hospital 2 days and now I’m home… wow. How does that happen…Thanku for keeping me in your thoughts. I’m so happy right now. I hope I can get myself well for garden season!! Have a wonderful day everyone!!
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Debbie!
It’s great to hear from you and I’m pleased you got through it so nicely! Take your time to get better. It seems like such a simple thing and only the tiniest hole used to do the embolisation but actually, it takes it out of you more than seems reasonable, so please be very patient with yourself.
Well done!
Very best wishes for all of 2022! Hopefully, we’ll see a couple of corners turned in the next 12 months!
Richard
Thank u Richard! I will do that for sure!!
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Fantastic news! So great to hear! John.
Debbie,
That’s amazing! Bravo! The dizziness, nausea and vomiting will ease up, little by little. I’m so pleased that the Zofran has helped.
Many years ago, after my crani surgery, I was given Zofran. Thing is, at that time it was only available for use IV, every 8 hours, in the hospital. Now, in its present form, many people benefit. (Oh, and BTW, I.V. Zofran didn’t help me then!)
You’ll be improving even more!
Thanku for the encouragement. Some days are ok some days are better some days aren’t so good!
And that’s very normal for a neuro recovery. I called it my ‘recovery seesaw’, up then down, up then down… Sometimes it’s manageable, sometimes it’s NOT. When it’s REALLY ‘not’, I need a bed in a dark room. You will learn your triggers and you will learn how best to manage for yourself and your own needs, be that medication, be that relaxation or be that (In my case) hibernation. Others may tell you their treatment or their remedy is the ‘miracle cure’. The reality is there is no ‘miracle cure’, what can work wonders for one person maybe of very little benefit to another, so you have to workout what works best for YOU and sometimes it just takes time.
You are on the road to recovery and that’s a good thing. My only advice is to listen to your own body. When it tells you to rest, you rest. I say this because I didn’t listen to my body’s signals ending in me doing myself more harm than good, requiring further neurosurgery. Your body will let you know, but only if you listen.
Merl from the Modsupport Team
It’s nice to hear that. I guess I am my new normal. I’ve been super depressed. Like what has happened? But we are snowed in it’s freezing I can’t get out and all the other stuff too! Thanku for responding. I’ll read and re-read. Take care and Thanku so much again
You’re very early in your recovery, especially if you’ve recently had a craniotomy on top of the embolisations. So there’s lots of time for you to get back to feeling a lot more like normal you. Just be patient with yourself.
Like, ridiculously patient.
You’ll be fine.
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Ok. I’ve always been the caretaker. Probably my hardest thing to quit. I know they’ll still love me. The house is a mess! It’ll keep I know. Thanku
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Recovery is very slow. I’m not very patient, so that was hard. It’s been four years and I’m still getting a little bit better.
I had such a hard time at the beginning getting used to the whole thing. It helped me a lot to talk to a therapist. It felt good to tell some one how I was truly feeling (hard to burden your loved ones) and she gave me some good coping strategies
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And I couldn’t agree more. My plan was surgery, recovery, then back to work. Only that didn’t happen, my recovery has been on a bit of a seesaw of symptoms. Some days that’s manageable, some days I feel like I’m right back at the start. My last major neurosurgery was back in '13 and still today I battle. I must admit, this journey really gets to me sometimes, just when I think ‘Ya, I’ve got this thing beat…’ it turns around and bashes me into submission. I eventually had to accept the reality of it all and that wasn’t/isn’t easy and I too had to ask for help via a therapist.
Me too. So to now have that turned around on me was NASTY. I was the helper, not the one who needed help and for a while I had what I refer to as ‘The caveman mentality’ ie ‘I man, I strong’ I don’t need help, I can do this all on my own. Only I couldn’t. The more I pushed my body, the more my body pushed back. It was actually my wife who identified it for me and she told me straight “STOP IT”. I was telling myself I was building stamina by pushing my limits. All I was doing was driving myself into the ground. I had to learn to accept it all and Ohhh, that was a very bitter pill to swallow.
Merl from the Modsupport Team
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The recovery period is VERY long after neurosurgery. Very long… I was eager to recover physically from the surgery, rehab myself, and return to work (a critical care nurse). I was determined that I would do “whatever it takes” to accomplish this. My body was not anyway prepared for this, however. I was depressed… ruminating, and unable to sleep. Life as I knew it was no more. Family and friends, no matter how caring, cannot provide the kind of recovery care of the mind that we need. Do not hesitate to find a competent professional to assist you through the losses and choices ahead.
Sounds like you are doing your best and benefitting. Keep it up!
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I do agree. Family and friends just can’t. They say things as if it will make it all ok again and all go away. But I feel deep inside I will never be the same. I hope and can do things again with my granddaughter. Fun things like buying outlet goodwill. Getting large ice cream cones from dairy queen. Working in the yard and garden to make them beautiful again. I so hope. Everything I say to my family they agree that it’s the same for them. It’s not I know and sometimes it’s a little disheartening, but I try to put it away and not bother with it. There’s no way u can know unless u know! Going thru it is the only possible way. I’d never want anyone I know and love to go thru this. Ever, never
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Well I just wanted to say it’s been 5 weeks since my craineotomy. I’ve been forced to be patient as I’m not feeling the best, mostly a heavy head and dizzy. I had 3 times of physical therapy and they said I am too well for it. I know it’s wonderful news but I don’t feel that well. So they referred me to vestibular therapy for neuro or my eyes, which I started yesterday. I felt pretty sick yesterday. I usually throw up once every 3 or 4 days. Yesterday it was 5 times. I’ve been taking oxycodone from my craineotomy and I’m pretty sure it makes me feel worse the next day. I take one to 2 a night because my head has hurt so bad I can’t find a comfy spot to sleep on. Even the sides! But I don’t think I’m going to take that anymore. The therapist seemed to agree.
Vestibular therapy is interesting. My eyes are in question. Or were. After 90 min of testing she thinks it will all be better with time and healing also. So no more tests. Just excercises.But I have at least 6 more times I go for 45 min each. I need to do the exercises in between for balance and strength. She was very smart and very understanding and she made me feel so much smarter than I have been since all this has happened. I want to walk two miles a day, drive my car, and plant my flowers and garden. That’s my goals…I don’t want to sweat the small stuff anymore!
Full time recovery is all I do for now!!
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Debbie,
You are right. Things will never be the same again. But, that is not such a bad thing. As my neurosurgeon said, “You will adapt.” Sounds so simple, but it is true. I am not saying that you won’t mourn some of your losses.
You will learn new ways to accomplish things. There were some BIG things I could no longer do, but I picked up new skills to fill some of the void. I threw myself into volunteering at the local animal shelter, read books about cat behavior, and sharpened observational skills. I joined a Hawaiian hula group. I joined to improve my balance, equilibrium, co-ordination, memory. I love it. And, it WAS beneficial physiologically and cognitively.
Family and friends are trying to empathize with us when they say that they experience the same things, but you and I know it is NOT the same. This to me is sometimes the hardest part about life after neuro injury and recovery. It is so wonderful that Ben’s Friends is here where you can unload your feelings. We get it!
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Thanku sincerely
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Hey Debbie,
Trying to get family/others to comprehend the realities of it all…??? Ahh, yea, good luck with that one.
I say this because I’ve tried. I’m in a bit of a unique situation, in that, I’ve had 4 of 7 family members all require craniotomies. One for brain cancer who sadly passed, her daughter who has a benign growth and associated AVM. The daughter’s stepson who was involved in an MVA and me. So to say we’ve had some ‘hands-on’ experience with the neuro world would be an understatement. And yet the daughter’s partner/husband came visiting one day when I was NOT at my best and started giving me a hard time because I ‘…should be over it by now… …she can (the daughter). why can’t you…?’. Let’s just say I was less than happy.
I’ve often spoken of ‘The broken bone theory’, 6-8weeks later and it’s all healed and things go back to normal. But for some of us that simply is not the case, we’re talking about the brain, not bone and the healing processes are completely different. I’ve required a few neurosurgeries (6 so far) and none of them have been the same in recovery and even today, years on since my last, I’m still on a daily (sometimes hourly) seesaw of symptoms.
Oxy and me are not a good mix. I like it too much or my body does, if I take it for a week and stop I start getting odd phantom pains, withdrawal symptoms as my body screams at me wanting more of that ‘Nice Drug’. I’ve got some here but I have to be in agony to be using it and only use it until I can get to the Dr’s. I have some much lesser opiates I try to maintain at a controlled level. I do use them daily, but I’m nowhere near the recommended maximum per day.
My balance is a mess. I’ve been to see the eye dr, the ear dr and neither found an issue. I had a chiropractor run me through vestibular therapy too, but to no avail. I’ve trialled all sorts of meds but none of them helped (some actually made it all worse. YUCK).
When I started this journey I wanted a timeline for recovery, then pushed to try to meet that timeline. What I have found is that there is no such thing as a ‘Normal Timeline’ in other words ‘it takes as long as it takes’. Somethings come back relatively unaffected, some things take time and some never come back Patience is key (and if you’re anything like me, having patience with self is not easy). I wanted it right and I wanted it right NOW!!! I used to work with people with challenging behaviours and I had patience to work with them all day, but patience with self, Ohh, I had to learn how to accept that (and I still don’t like the reality of it all).
Personally, I think you are going about it in the right way. You’re speaking to someone, a therapist, that’s a good thing. You’re following through with suggested treatments and specializations ie vestibular and eyes and you have longer term goals ie gardening, walking, driving etc. These are all BIG pluses in my humble opinion. Some people can get stuck in a pit of self pity and stagnate, what I call the “Poor Me’s” (I know I did this for a while, but pulled myself out of it). Having goals gives us something to aim for in the future, following through with other treatments gives us the ‘Now’ and talking to a therapist can assist us to deal with reality of what has occurred
AND
You’re looking at all of this just 5wks post craniotomy??? WOW. WELL DONE!!!
I was still bedbound 80% of the time at a similar 5wk mark. I was firmly stuck in the ‘poor me’s’ stage, my nausea and dizziness and pain was just horrible and a constant reminder. I had to learn how to best manage my nausea and dizziness and pain before I could go much further. And that alone took much longer than I’d anticipated.
You’re doing OK, actually, at 5 weeks… …You’re doing fantastically. Congratulations.
Long may it last.
Merl from the Modsupport Team
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Your awesome! Thanku for that. So sorry you’ve had such a hard time tho. U sound like a fighter and I’m sure your going to be well. So u use zofran? It seems to help me with the nausea. I wish I could go without it but I can’t seem to yet. Yesterday was a bad day and it didn’t matter if I took it or not. Today was great again. I was really tired from the therapy but I just slept alot. My husband has changed the most probably. He doesn’t guilt trip me for me needing rest and he’s definitely the homemaker now, which I need.
Thanks for all the encouragement!! Take care of yourself…